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Lymphedema Therapy as An Area of Practice

Published March 3, 2008 9:54 AM by Lorraine Calhoun

I am a lymphedema "nerd." What that means is that I love working as a lymphedema therapist and I love reading about it, and learning more about it, and discussing the work with my peers.

My area of practice in my work as an OT is with people who have Lymphedema. Lymphedema is a chronic disease that we didn't learn about in college. It requires further continuing education to learn how to work in it, and it's an area of therapy that I was drawn to the minute I heard about it years after my graduation as an OT.

I was drawn to work with breast cancer survivors who developed lymphedema. I then went on to learn that the treatment of lymphedema covered more areas than the problem of lymphedema from breast cancer. There are many occupational and physical therapists who are quite busy with a caseload of patients who enthusiastically want to have a treatment that is so non-invasive and really helps them to live with this chronic disease!

From what I have gleaned at the many continuing education conferences I have attended, the gold standard for lymphedema is CDT, or Complex Decongestive Therapy. This is a combination of manual lymphatic drainage, compression bandaging, exercise while bandaged, compression garments and meticulous skin care.

What is lymphedema?

Lymphedema is actually an accumulation of a protein rich fluid in a body part such as an arm or leg; this protein rich lymph fluid can cause inflammation. If left untreated, the inflammation will cause fibrotic changes in the tissue.  It differs from most other occurrences of swelling by the protein rich nature of the edema.

Most people have heard of lymphedema as a side effect from cancer treatment, in particular when the treatment consists of removing lymph nodes (which will help the oncologist to stage the cancer and determine treatment options). Radiation can also increase the risk. No one knows who or why an individual will develop lymphedema.

Lymphedema that develops after cancer treatment is called secondary lymphedema. There are some guidelines to follow for patients at risk for developing secondary lymphedema from cancer treatment. It is helpful to care for the area of the body that could possibly be affected by these lifesaving cancer treatments. For instance, blood pressure cuffs are not used on arms where the lymph nodes were removed, as a precaution.

Another form of secondary lymphedema is caused by an infection called filariasis. This can occur in the tropical areas of the world caused by a mosquito born parasite; rather uncommon in the United States, the treatment would be the same.

There is also primary lymphedema, which has a genetic or congenital component. To put it in very simple terms, primary lymphedema is caused a mechanical insufficiency of the lymphatic system. Examples of possible problems are that there not enough lymph collectors in the affected area, vessels could be less functional, there could be an absence of lymph collectors or there may be other problems with the way the system functions. 

I could go on and on talking about this. There are other causes of secondary lymphedema, and there are also other diagnoses that are combination types, such as chronic venous insufficiency and a resulting lymphedema, and obesity and lymphedema. Both of those combination types can be treated with the compression bandages and compression garments.

I find this work to be exactly what I want to be doing in OT. It consists of constant ongoing learning and adaptation of the fundamental treatment principles to be helpful to the patient and his or her unique needs. The work is done individually with patients and the patient is an active participant in the therapy, or if he or she is unable a family member may be the helper. The patient will benefit greatly with "proactive" participation.

Another great aspect of treatment, also very proactive, is the use of diaphragmatic breathing, which is my most all-time favorite aspect of self-care ever!

Go ahead.

Call me a lymphedema nerd. That is okay with me.

I would love to hear from you. Are you working in an unusual area of practice that you never trained for in college?

Until next time,

Lorraine

12 comments

Dear Tarrah,

Thank you so much for your comment, and your story. It is so important for those of us on the therapy side to know the story behind the person. I wish you great success in your studies!

I would like to share with you the story of another young woman who has primary lymphedema in both legs. She has gone on and had a career, married and has children. She takes good care of herself and has not let this stop her from having the life she wants.

Your attitude of gratitude for what is good about your life is quite inspiring, and will be helpful to you as you do put forth that effort for your self care.

To your good health,

Lorraine

Lorraine Calhoun, Lymphedema Specialist - OTR/L CLT, Advanced Lymphedema Therapy Services March 21, 2008 1:30 PM
Langhorne PA

Hi Lorraine,

Kudos to you on your research and dedication.  I am am a 25 year old training to become an architect, and I have primary LE lymphedema.  I was diagnosed 7 years ago, during my first year of college, in the  first month of my freshman collegiate volleyball season.  I am very grateful for a doctor who actually pursued the answers to why my ankles were swollen, rather than ignoring it, as so often occurs.  I am amidst self care, and it is never easy, and definitely never makes me feel like an attractive 25 year old woman.  It is also difficult to find others like me, as most patients have secondary lymphedema and are much older than I.  I fear the impact that lymphedema will have on my career, my desire to have a family, and my health, but I am thankful that I have a condition that is manageable, and not painful on a day to day basis.  

It frustrates me to think that medical technology today has not reached a solution to this condition, but it is with wonderful occupational therapists like you and your colleagues that give lymphedema patients hope for innovative treatments and the future elimination of this condition.  

Thank you again.

Tarrah March 20, 2008 2:21 AM
Los Angeles CA

Hi Steve,

I would be glad to know how you proceed. I am guessing that you have a question and many more of this group has a similar situation.

It is a pertinent situation to many people.

Best of health to you,

Lorraine

Lorraine Calhoun, Lymphedema Specialist - OTR/L-CLT, Advanced Lymphedema Therapy Specialties March 17, 2008 9:52 PM
Langhorne PA

Lorraine,

Thank you for taking the time to answer. My sister has been in denial for a long time, and I am planning on contacting her husband, and ask him to find a Psychotherapist to help her get started on the road to recovery, and hopefully get her the support she needs.

I really appreciate your willingness to answer this even though you are really reaching out to other Lymphedema Nerds.

Thank God for NERDS!

I will report to you how we are all doing sometime in the future.

Sometimes you need reassurance from an outside source, I

won't bug you, but I have a feeling you would like to know.

Kind Regards

Steve

Steve March 17, 2008 9:11 PM

Dear Steve,

Thank you for your comment. I cannot really tell you what to do, but I can give you my opinions.

I think you are totally correct that if your sister is depressed, that needs to be addressed. Perhaps your family might support you with this and help her seek medical attention for depression?

Next, treatment for lymphedema really requires a motivated patient. It is a large investment in time and sometimes money for supplies and other things, such as larger shoes to accommodate bandages, or stretchy clothes to accommodate bandages.

That said, and again, this is my opinion, if she moves through her depression and does not want to help herself, all you can do is be supportive. You cannot do it for her.

It is not easy to witness a loved one with a chronic illness. I honor your caring for her.

Warmly,

Lorraine

Lorraine Calhoun, Lymphedema Specialist - OTR/L-CLT, Advanced Lymphedema Therapy Specialties March 17, 2008 8:39 AM
Langhorne PA

Dear Heather,

Thank you for your comment! I hear you!

It is really great that you are thinking about your own body. I totally agree with you that the positions we need to get into are challenging, in particular when we work in patient's homes.

That said, as you well know, the more you do for your own health and well being the better you will feel. It is good for you and a good example to your patients that you are physically fit.

I can tell you what I did for myself. One, I am back on a consistent basis working out. In my opinion, consistency is key. What I discovered when I took a yoga class that fit into my schedule was Svaroopa yoga. It helped my back after one week of classes. (The backache I got from standing over the massage table.) Now I take several classes, and have a home practice. I am sure there are other types of yoga that will help. Svaroopa helps to relax the deep spinal muscles. I love it. It is my oasis.

I can now have several different positions to utilize when working on the floor for lower extremity bandaging. Before the Svaroopa I only had one, kneeling, and my tibial tuberosities were actually feeling bruised.

I also have a little foam pad that I bought for $3 at the grocery store that was meant for swimming. Anything you may want to use for your knees that will soften that hard floor!

Lastly, be aware of your posture. I found myself placing my neck in odd positions. Now I think about my posture, and adjust it as often as I can.

Can you keep me posted? I would love to hear your ideas!

Warmly,

Lorraine

Lorraine Calhoun, Lymphedema Specialist - OTR/L-CLT, Advanced Lymphedema Therapy Specialties March 17, 2008 8:29 AM
Langhorne PA

My Sister has been diagnosed with  Genetic Lymphedema.

She is 54 years old 5'2" and weighed about 275 pounds at the time of the diagnosis. She never smoked cigarettes until the age of 45, at which time she started smoking clove cigarettes which are worse than regular cigarettes and nowsuffers from asthma, and all kinds of circulatory problems and depression.  She has very little will power and cannont diet for very long periods.

She slowly gained weight after highscool, becoming pregnant and gained probably 70 lbs.  She never lost any weight after the pregnancy and had another child and at age 25.

Her Lymphedema is prevelant in her  lower legs, and she has wraps of variouis sizes, that she doesn't use as often as she should.

She has now decided to seek Medical Marijuana as a solution for the pain.

I truly believe the depression is causing her to think unclearly. She has a very controlling, dominant personality and tries to convince everyone she meets that there is no help and her disease will do nothing but get worse. She is constantly on the internet and finds selective articles to support her theories.

Every time I look on the internet, the articles I find talk more about how people suffer from Lymphedema caused from surgery or cancer treatments.

I can't help but believe my sister's Lymphedema could be lessened if she were to lose weight, quit smoking and get some psychotherapy.

I found an article about Lymphadema and the Atkins Diet, and it says it would be very beneficial.

My sister has every excuse in the world not to diet, and I really believe that is the root of all of her troubles.

I want to help her and we are thinking about some tough love and an intervention.

She is open about the disease but in denial as far as treatment.

She lives in a nother state, and her immediate family has more or less given up trying to talk to her about it, because she always goes back to excuses.

Help

Steve March 16, 2008 1:54 PM

I too am a lymphedema therapist.  I've been an OT for 3 years, and have been treating lymphedema patients for 2 years. I started the lymphedema treatment program at the small hospital where I work. There are times when my case load is large, meaning up to 5 lymphedema patients per day. I treat inpatients, outpatients, and more recently home care patients.  Although mentally I am keeping up with the challenge, physically my body (specifically my back) is beginning to burn out. I am 31 years old, physically fit, and really should be up for this challenge! Are there any suggestions you can make that might lessen the physical strain? I'm finding that especially with lower extremity affected home care patients, it's difficult to find good positions for the patient and for myself during the treatment.  Thanks!!!

HEATHER March 16, 2008 1:51 PM

Hi Vicki,

Thanks you for your comment! I wish you the best with your move. Congrats on the busy clinic. I agree with you that it is so important to build good relationships with the referral sources.

It sounds like all that you did before paid off. Did you document your systems for yourself in order to repeat the process in your new environment?

It is hard to believe that you did not get a good welcome. I am curious to see how you would fare with contacting the non-cancer doctors? It would be great to see some of the patients before they get the wounds!

Keep us posted! 

Warm regards,

Lorraine

Lorraine Calhoun, OTR/L CLT March 13, 2008 9:25 PM
Doylestown PA

I, too,  am a lymphedema nerd.   I have been an OTR for twenty five years.   Three years ago,  I got my CLT certification and I love the way it has changed the direction of my career.  Shortly after training,  I gave a number of inservices to referring physicians and now our practice is booming.   We have jumped from having one to four lymphedema therapists and I think we could add more.

I have found that patient sucess has been the impetus in driving our caseload.  Patients are amazed with their outcomes,  their physicians are amazed and then we tend to get more referrals. My family and I will be relocating to Colorado this summer.    I just submitted a proposal to establish a lymphedema program at a major cancer program and received a letter back that their patients don't get lymphedema.  I have a feeling I will have a lot of work ahead of me in educating physicians on the benefits of CDT.  Hopefully,  someone has some good feedback and support in Colorado.

In Maryland, our major referral sources are radiation oncologists,  oncologists,  vascular surgeons,  wound care clinics, internal medicine and bariatric surgeons.

Good luck to you in your practice!   Vicki

Vicki Ralph, Lymphedema - OTR/L CLT LANA March 13, 2008 2:57 PM
Rockville MD

Hi Peggy,

Yes, we do the whole works. It includes manual lymphatic drainage, the massage portion, bandaging and compression garments and the exercise and skin care as you did.

I actually have seen it improve quality of life in some late stage cancer patients.

I do know that it took lots of networking and in-servicing to get referrals when this clinic was started by the owner. It is always nice when the patients refer friends as well!

Best of luck to you,

Lorraine

Lorraine Calhoun March 4, 2008 9:17 PM

It's great to hear that you are also working with clients with lymphedema! Our center have just started the area but are actually having difficulty to get the doctors to refer them.. We've only targetted cancer patients in this area.

Do you actually do the Complex Decongestive Therapy? What we've done is mostly fascilitation of the joints movement ,compression garments and basic skin care. other than that its just to improve the patient's quality of life.

It's really interesting to hear that you are doing the  diaphragmatic breathing. As in our center, only the physiotherapists are allowed to do them.

Regards

Peggy Lim March 4, 2008 7:35 AM

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ABOUT THIS BLOG


    Lorraine Calhoun, OTR/L-CLT, Coach
    Occupation: OT, Certified Lymphedema Therapist, Coach
    Setting: Doylestown, PA
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